Suicide in autistic people originates in the inequalities they face across their lives, starting in childhood, and spanning education to employment, and health and social care, a new study by a team at Cambridge and Bournemouth Universities has found. The researchers call for a radical change in the way society understands suicide and mental illness in autistic people, who are three to five times more likely to die by suicide.
The study, published in eClinicalMedicine, involved over 2,500 autistic people and allies/supporters of autistic people. It is part of the biggest ever survey on suicide among autistic adults.
Historically, suicide has been attributed to mental illness, and mental illness has often been seen as an inevitable consequence of and an inherent part of autism. This narrative locates “sickness” in the individual, addressed by clinical interventions that support individuals at crisis point rather than looking at and addressing the underlying societal contributions.
In contrast, participants in this study were clear that the “seeds of all autistic suicide deaths” are set in childhood, by missed diagnosis and educational systems that fail to support special educational needs (SEN) pupils. Participants in the study highlighted school years as the source of many later problems.
Professor Sir Simon Baron-Cohen, principal investigator and Director of the Autism Research Center, said, “Participants in our study highlighted the dire straits faced by many autistic people and their families in the UK. Misunderstood and unsupported by staff, bullied by pupils, autistic people explained that school experiences sow the seeds for their later suicidal thoughts.
“The parents of autistic children described being threatened by the legal consequences of absenteeism when their children were unable to cope in mainstream schools.”
These findings are startling given forthcoming SEND reforms, which are likely to result in EHCP (Education, Health and Care Plans) being scrapped for many autistic, ADHD and SEND pupils.
There are fears that this will strip legal protections from many vulnerable children and parents, and place unrealistic expectations on under-resourced schools and under-trained teachers to support students in mainstream settings.
While many participants focused on their school years as the source of their suicidal thoughts, others pointed out how “absolutely useless and without hope” autistic people feel on leaving the education system. They report insufficient transitional support into adulthood, lack of support in the community, inadequate welfare systems and employment support, and inaccessible and damaging health care systems.
The seeds of suicide thrive in a culture where autistic people feel unwelcome and unwanted, they said.
Autistic people have the lowest employment rates of any disabled group, with only 30% of autistic people in employment currently. Improving employment rates among autistic people is another priority, given the role participants said that employment difficulties and related poverty played in their suicidal thoughts.
Beyond education and employment, autistic people in the new study were clear: halting progression towards suicide deaths requires committed long-term vision from the government. Chief among this is a commitment to a properly resourced and co-produced Autism Strategy, as called for in the recent Autism Act Review.
Dr. Rachel Moseley, lead author of the new study and principal academic at Bournemouth University, said, “Our suicidal autistic participants expressed desperation waiting for health and social care that never arrives. But they didn’t reach that point of desperation overnight. Rather, they got there through a lifetime of inequalities in a society that fails to protect and support autistic people. There will never be enough crisis support to save every suicidal autistic person if we don’t disrupt the suicidal trajectory.”
Co-author Dr. Carrie Allison, Deputy Director of the Autism Research Center, said, “If we consider suicide in autistic people as a societal issue rather than an individual one, then we can do something about it. Autistic deaths by suicide are needless and preventable. We urge the government to partner with autistic people and their allies to develop a cross-sector strategy to support autistic people throughout their lives.”
The study was initiated by charity Autism Action, whose number one priority is reducing suicide in autistic people, and led by the Autism Research Center at the University of Cambridge, with a project team including academics from Bournemouth University, Newcastle University, University of Nottingham, and SOAS University of London.